My journey with spondyloarthritis began in December of 2022. One day, I went to the dentist for a routine filling. While there, I was told that I needed braces. Then when I visited the orthodontist, he said, “Yes, you need braces, but first you need jaw surgery.” Then I went to a jaw surgeon and was told, “No, you don’t need jaw surgery; you need a total joint replacement.” After a series of referrals and appointments, I was eventually told that I had a condition called IDR, which stands for idiopathic condylar resorption. Essentially, the bones in my jaw joints were disintegrating, and I would need total joint replacements for both the left and right jaw joints.
Unfortunately, my insurance was out of network with the recommended surgeon, so I was told I had to pay out of pocket. I started a GoFundMe to help cover the cost, but it was not successful. I then tried to find another surgeon but was met with roadblocks: one was leaving the practice, and his replacement was not accepting insurance. The process was frustrating, and I was starting to resign myself to a life of pain.
However, a chance encounter with a neighbor changed everything. A woman on the NextDoor app told me that her friend’s daughter also had IDR, and she recommended her friend’s daughter’s doctor. To me, this was a sign that I should not give up hope. I continued to face challenges with referrals and appointments, but eventually, I was able to see this doctor, and on August 14, 2023, I received an official diagnosis of radiographic axial spondyloarthritis, or axSpA.
Before my diagnosis, I had experienced a variety of symptoms that I hadn’t understood. I had chronic neck pain and stiffness, chest pain, hip pain, and weakness. I had lost a significant amount of weight due to the pain and discomfort. I had even undergone an unnecessary surgery in 2020 for my severely swollen knee, which an orthopedist had misdiagnosed as a torn meniscus. It wasn’t until I saw the rheumatologist last year that the pieces started to come together. My MRI showed indistinctness of the sacroiliac joints and partial ankylosis, and I tested positive for the HLA-B27 gene. All these factors confirmed my diagnosis of axSpA.
My rheumatologist discovered that the inflammation from axSpA had caused anemia, and I was prescribed medication to help manage the symptoms. I also began treatment with Humira. After just two doses, my SED rate decreased significantly, from 128 to 15. This was a promising sign that the medication was working, and my symptoms were improving.
Unfortunately, my journey did not end there. Years of untreated axSpA had already caused extensive damage. I had multiple auto-fusions, mild basilar invagination (pressure on the brain stem caused by a vertebra pushing into the opening at the skull’s base), and IDR. On November 28th, 2023, about a year after I’d gone to that fateful dentist appointment, I had spine surgery to address some of the damage caused by axSpA.
Looking back, I realize that I had been experiencing symptoms for years, but they were often dismissed or misdiagnosed by doctors. I couldn’t have ever guessed that the symptoms were related to each other. Fortunately, that routine dental appointment led to the discovery of my jaw issues and eventually to the rheumatologist who put together the puzzle pieces of my axSpA.
I’m twenty-seven years old and have already been through a lot of pain and turmoil; at the same time, I have a lot to look forward to. I recently got engaged, I’m healing from spine surgery, and even though I have a ways to go, I am feeling the best I have in months. Once I’ve recovered from this surgery and my axSpA has stabilized, I’ll be able to have the IDR surgery. I hope that sharing my story will help others be more aware of the signs and symptoms of axSpA and get the help they need.
Cheers to healing!
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